Tag Archives: Alzheimer’s Association

Cheering on Lives

68718I entered Arden Courts, arms loaded with a box of cookies. High-pitched vocals echoed through the hallways and I cringed.

From down the hall, a familiar voice rang out. “Your mom’s down here.” It was Becky, the activities director.

I nodded her direction. “Ok. I’ll just put the cookies away (meaning out of sight of lurking cookie monsters) and come find Mom.” I shuddered to shake off the shrill, but pleasing, notes drifting alongside me as I coursed through the hallways.

I let one of the caregivers know about the cookies’ whereabouts and sauntered towards the community center. As I closed in, the singing voices sounded more like, well, cheerleaders. Wasn’t it way too early in the day and my coffee intake for cheerleading?

I approached the doorway, glancing around the room for signs of Mom. At first, my eyes skipped over my own mother because she was squirming in a wheelchair. Probably to move her more effectively for the music show.

I entered the room from the rear. Blood pulsed through my ears as they were again struck by the voices of the woman crooning and carousing with the crowd of residents who merengued with shakers and tambourines to the tunes. A chorus of residents hollered, “You’ve got the cutest little, baby face.”

For a spell, I watched this spectacle and Mom from back of the room. Like the bouncing ball over top of old songs on TV, Mom’s eyes followed the bopping women around a room cramped with wheelchairs and restless residents.

Finally, the two blonde-haired women and their accompanist, one female singer and one male, stopped to catch their breath.

“Hi, Mom,” I whispered in her ear. I kneeled down and lifted her hands to help shake the plastic maracas she held. I couldn’t tell Mom to do so, because, well, she wouldn’t.

Hints of Me and My Gal floated around the room. I couldn’t move, mesmerized by the women and their accompanists with such chipper manners and the thinnest layer of makeup to enhance the joy they exuded and extracted. The two lead singers’ faces gleamed while they danced around in blacks tights and a purple sleeveless athletic shirt. They also wore something else. Contagious smiles.

Becky leaned in to me. “They’re former Ben-Gals. Priscilla, and Julie helped, started this group and they’ll be coming the next few weeks.”

Another resident wandered off and a chair opened up next to Mom. Settled into an oversized- transport chair, Mom wasn’t likely to meander. Each time Julie or Priscilla patted Mom’s arm or passed her by while dancing to Ain’t She Sweet, Mom’s hazel eyes grew brighter. She lifted her eyebrows as if in disbelief.

Over the course of an hour, the women met Mom’s gaze or that of the other residents with an intensity I cannot replicate. One ran her hands along the sleeve of Mom’s bejeweled shirt and Mom caressed the performer’s glistening cheek in return.

During the next song, Priscilla stood before Mom, holding and swinging hands. She was the true founder of Cheering for Charity. Priscilla’s mother passed away in 2008 from Alzheimer’s complications and Priscilla founded the organization shortly thereafter, to bring more life into the world of those with dementia or living in other care homes.

Still locking arms with Mom, Priscilla spoke her words to me. “I see my mom everywhere.”

I nodded. Her work had become about her mother’s life. That mantra I understood.

The pianist played a few notes, prodding the audience towards the next tune. “Shine on, Harvest Moon,” she serenaded the residents and the velvety tones covered the room in warmth. Then, I Want A Girl (Just Like The Girl That Married Dear Old Dad) followed.

Peggy, a petite and ebullient resident, stood from her chair and tugged at Julie’s sleeve. “Do you want to see the gal that married dear old dad?” Her hands shook. From between two tattered cards carried in her purse (many women carried purses), she pulled out an old-fashioned, airbrushed photo of her mother.

“She’s beautiful. She looks just like you,” Julie directed back.

Peggy beamed. “Everyone says that.”

I bent over the photo. “What was your mother’s name?”

“Margaret. Just like me.” Her chubby cheeks grew round.

After the close of the event, Leah, the pianist, handed me a business card. Later, I sent the group an email in appreciation for their gift of goodwill: My mother is not one to follow directions, so she won’t shake a tambourine for instance, if you tell her to, but I discerned, from her smile, that she found your presence a light in the midst of her sometimes dark mind.

I meant it. Theirs had been the rare entertainment with exuberant voices, a hop in their steps, glowing smiles, and a compassionate touch.

Only an hour earlier, I had sat in the parking lot, hands glued to the my steering wheel, debating whether or not to listen to the president’s press conference about the mass shooting in Las Vegas. My heart clamped down to prevent the flow of news. I exited the car and trudged into Arden Courts.

When I departed 90 minutes later, I faced the bleakness again, this time with more strength. There had been a catharsis in those moments with the cheerleaders. I used that term with the utmost respect.

I had given up cheerleading in ninth grade to tryout for volleyball (it was a win-win for many folks). Throughout the morning performance of Cheering for Charity, I had maneuvered my thoughts away from Las Vegas and towards my junior high cheerleading days. Getting stuck grabbing a basketball net while another cheerleader walked out from beneath me, and our seventh grade history teacher who tried to helped me down. Skirts flipped up by the boys seated behind me in Spanish class. The fact I could never do the splits, not all the way.

Many ah-ha moments often washed over me whenever I left my mother. Pressing the ignition button with my index finger, I hummed to myself. “I’ll be loving you, always. Always.” I tried to mimic Julie’s sweet tone. The memory of the glow circling my mother’s face lit up the interior of my car.

That particular day, the women had not only cheered on Mom to find a way back to the youthful lightness of her days. The group had cheered on the ever-so-small movements in the midst of a horrific maelstrom occurring 2,000 miles away. For forty-five minutes, I too had forgotten my despondence and joined in the chorus of cheering on lives.

AJW, 10/3/17

Advertisements

1 Comment

Filed under alzheimer's, arden courts, care partner, dementia, mom, non-profit, Uncategorized

In Theory, Practice, Life

In Theory

FullSizeRender (76)“My eighty-nine-year-old mother was shoving furniture around yesterday, using her superhuman strength.”

I was presenting to a group of docents at the Taft Museum, in training for Memories in the Museum, a joint program through the Greater Cincinnati Alzheimer’s Association and Cincinnati’s art institutions of Cincinnati Art Museum, Taft Museum and the Contemporary Arts Center. The series of four programs, each offered at the three museums, encouraged individuals with dementia and their caregivers to partake in art appreciation through specially-curated tours, discussion, refreshments and art.

“When Mom spotted me, she grumbled. ‘ C’mon, c’mon’. I knew to help her despite the rant.”

She continued on until the effort wore her down and – her chair hit a wall. An hour later, after slowing down our time together to an almost crawl of the hands around the large clock, Mom reached out for me and said, “I love you.”

The audience of docents quietly hummed.

The convener of the training, Lisa Morrisette, had recently attended a symposium on arts and Alzheimer’s in Denver called Art Access. Earlier, Lisa had reviewed concepts from the symposium, one being person-centered care or taking a person-centered approach. Anything person-centered had become a buzzword in arts and Alzheimer’s community settings.

In working with the local Alzheimer’s Association, I was in attendance at the Taft that day to discuss ideas on pairing painting and poetry for the Memories the Museum program. I continued with my talk.

“After hearing my mother’s soft, sweet voice say ‘I love you’, I would take Lisa’s words one step further and say, we need to take a human-centered approach.”

I facilitated my program and eaxmples, using a short poem about the Mona Lisa and a comparable writing subject of the Cobbler’s Apprentice.

Cobbler's apprenticeHis ears, large, elephant-like
for such a young boy
what else has he heard?

Eyebrows, umbrellas shading eyes
from deals after dark
what else has he seen?

Those berry-plump lips
which young miss
will he kiss next? – AJW

Panelists had also been seated at the head of the room. The group included two individuals in the Memories in the Museum program. Each had attended the series for a while. One female participant excitedly shared about the program. “It’s the highlight of my week.” Her caregiver husband admitted though, he was not “a museum person”. For C., a former art director now experiencing dementia, his words reverberated through the room. “Coming to the museum was like coming home.”

For several days, his comment literally stayed with me, scribbled on the back sheet of my agenda buried in my flimsy, black tote.

It was all the evidence I needed. When I think of ‘person’, I think of the physical container that is the body, the shape. But ‘human-centered’ allowed me to see failings, frailness, and fears, as well as the life experiences that shaped that person over time.

In Practice

Two days later, my work took me to Memories in the Making, a program distinct from the one above and operated by the local Alzheimer’s Association for over 15 years.

Participants arrive with their caregivers. The caregivers attend a support group and participants work with the Time Slips offering images designed to stimulate recollections and imagination without the pressure of total recall. Afterwards, their apt facilitator, Joan Hock, leads them in an art project, some quite complex. For some individuals, Joan had witnessed their decline in art before it was apparent in life.

Instead of the Time Slips program, my colleague, Pauletta Hansel, and I, facilitated our session with poetry and writing on the theme of cars. The caregivers rejoined later to hear our readback lines from participant’s writings and spoken thoughts.

Betsy shared, “I ended up flat in the mud….I’m still here, stuck in the mud”. She and her husband’s eyes widened as together they recognized Betsy’s words describing an event that happened long ago. The irony of those words was an appropriate account for someone experiencing dementia. The individuals were in essence, stuck in many ways. The art and words helped them out of the rut. (Read our group poem below).

In Life

I hustled from that class, raced home to care for the dog, and sped along the highway to visit with Mom. She and I had spent six of the past seven days together, as I had been concerned with her recovery from a seizure. I was also leaving for Oregon for five days and had racked up hours to make up for the difference in my absence.

Becky, the activities director, informed me how Mom had been in a glowing mood, which was better than glowering. I was not to find the same. Mom grabbed me by the hand to assist in raising herself from the chair. Soon, Mom shuffled around on sidewalks outside. In a wheelchair, another resident, John, chose to follow us. John had Parkinson’s but displayed less outward signs of dementia.

“You’re the POA for your mother, right? My brother is mine. And I want to go to Charleston.” John had spoken long and longingly about Charleston in the same way I spoke of Oregon.“But my brother and sister say I can’t. I need more help. I don’t have much money left but I have some. Do you know the name of lawyer? The doctors say I only have six months to live.”

His words came out rapid fire, as if John were afraid he might lose his life if they were not dislodged from his brain at that moment.

John had been residing at Arden Courts for less than a year. We had chatted about Charleston after I shared that one of our daughter’s lived there. We had talked shop about photography. He once wheeled away and whizzed around the hallways to track me down and proudly show me a Shutterfly book comprised of his most recent photos before the disease took over.

John had been somewhat mobile upon entering Arden Courts, but soon enough, his body began whirring through the stages of his Parkinson’s. He had experienced a few falls because he wanted to get up and out. John was now limited to a wheelchair, but strong enough to wheel himself around and up over the humps of the threshold to the outdoors.

John trailed us and tried to explain his situation with Mom and I. Mom, who could not hear well, let loose a torrent of nonsense, frustrated because of her impaired hearing and comprehension. She was also prone to possessiveness, but I had no way to prove it.

Finally, Mom tired out. She zeroed in on a chair to my left. I guided her to a seat. In an instant, John rolled alongside. He wanted to hold Mom’s hand. That was just a very John thing to do, to try to calm Mom down and speak to her.

He peppered me with more questions while explaining his last wish was to travel to Charleston. Due to his arresting speech patterns and Mom’s interruptions, I was fuzzy on the details. Did he wish to stay in the South throughout the duration of his life, or did he simply want one more visit?

With tired eyes, I stared into his lint grey-blue eyes, eyes that once ran deep as the ocean when I first met him and he asked me out for lunch. I didn’t know his family, though I had cursed them under my breath for no reason. He possessed a computer and wanted his speech recognition software to function. He insisted that his brother was working on it, but I didn’t know what to believe.

John panted, desperate to tell his story before his story stayed buried in the sea of memory. He wanted to be with his son, who had been at the Citadel. However, if my memory served me correct, his son had been transferred to Oklahoma or Texas. But that was my memory…

I encouraged John to talk to the staff about the lawyer. If he had the means, and if his family was holding him back, I wanted him to have the chance.

His story stuck to me like a wet leaf leftover from a rainy day. I researched “make a wish for old people”, though Jim wasn’t old. And there was a program that existed, the Dream Foundation, “giving life to final dreams.”

IMG_3575In 24 hours time, I would be standing in my “last wish” place. The place I want someone to drive me to, and seriously just leave me there. It would be the last and only item on my bucket list. If I accomplished nothing else in this life, it would be that.

However, my mother’s last wish was unknown. I often thought hard about that. She was mostly if not always about her children, her food, and a little peace and quiet. Last wishes always seemed tinged with regret. But Mom wasn’t a regretful person. Her last wish would most likely be a final dinner prepared with her five children surrounding her, no fighting, no arguing, everyone arriving on time.

IMG_3695I can’t make John’s last wish come true, but I’ll keep asking. Maybe, I’ll conjure up a time for Mom when she could expect her children to act like “normal human beings”.

Human beings who want a life that is relevant and remembered, the comfort of family and food, and a place of rest that perpetually reflects who they were before a disease ravaged their person.

 


From our Memories in the Making session:

Our Cars: Memories in the Making

I.
Metallic green on green Chevy Nova.
A turquoise ‘56 Ford.
Six of us in the station wagon—
a not so fancy car.
The ladies got to ride in my rumble seat.
That’s what it’s for.
I rumbled all night.
I had a Chevrolet. It broke.
My favorite car was any that worked.
I married a mechanic, you see.
I never rode in a car when I was younger.
I paid for my own first car
and never wrecked it.
It was a pretty small car,
the smallest Ford I could get.
I had to have a convertible.
I think that’s why we got married—
my husband wanted a Ford Mustang
and he couldn’t afford it without both of us.
I went to Theis Motors in Reading
to buy my Chevrolet.
Remember the Twin Drive-in in Bond Hill?
It was a requirement to sneak in.
Who knew how much it cost.
We had more in that rumble seat
than you can imagine.
There was always room in one of those cars.

II.
Are we there yet?
Cumberland Falls. Virginia. Wichita, Kansas.
Driving through the storm in the basin of California.
Where I grew up was flat,
the Red River where it flows
into the Mississippi—
the rivers and the swirling highways
is the most of mountains I got.
We went to my mother’s family in Virginia once—
after that, we said, come to us.
The car was the only place
my dad didn’t know how to hit me.
I was one of those kids.
In the car I was safe.

III.
Driving through the mountains,
the windows open,
listening to the wind.
Sitting around a nice fire
watching the night sky—the stars
and only the sound of the animals.
Once we went camping
and he said, when we get married
you’ve got to make me do this.
And we never did it again.
My wife drives more than me.
She drives me crazy.
My husband taught me to drive.
He’d always park me on the hill,
and I’d panic when it would roll back.
I never was good on the cars—
how many I drove into!
Once I ended up flat in the mud—
my son and all his friends went quiet.
That was my introduction to Cincinnati.
I’m still here—stuck in the mud.

IV.
So many road trips I’d still like to take.
I loved driving in the car.
I still do.
I just like going, driving—
it’s a form of meditation.
Now we are moving on
to children and grandchildren
and lots of memories.

From participants in Memories in the Making with Annette Januzzi Wick, Pauletta Hansel, and Joan Hock of The Alzheimer’s Association of Greater Cincinnati, September 14, 2017. (Composed by Pauletta Hansel)

 

Leave a comment

Filed under Uncategorized

Organizing a Mind – Writing Our Lives as Caregivers Workshop

Writing Our Lives as Caregivers 8-2017 (1) (1)-page-001When my mother began her slow waltz with dementia, I was living in southern Ohio, dancing in new love and blending families. Mom still resided up north, near Cleveland. Each time I visited, I had witnessed various versions of a mom I didn’t recognize. Each time I drove back to Cincinnati, I was steeped in the shadows of what was soon becoming, or had already become, the darkening of her memory.

The story of how she got from there to here has been the subject of poems, blogs and novels. But the narrative of writing as a tool to forge a new relationship with my mother is a story that is boundless.

Not long after I accepted (maybe not really) Mom’s stage in life, I had been listening to a podcast about an Alzheimer’s writing circle, begun by a well-known psychologist, Dr. Alan Dienstag, and famous novelist/playwright, Don DeLillo. I was prompted to undertake the same.

One day, sipping coffee with Leigh, a good friend from Loveland, I mentioned the prospect. She dropped a hint into our conversation.” If you ever do that, let me know. I might have some time to help.”

Thus was born Found Voices, a writing circle for individuals with mild to moderate cognitive loss who lived at the Alois Alzheimer’s Center in Cincinnati, a facility renowned for their approach in caring for residents, and also renowned for their costs.

The program director not only welcomed my pilot program. She connected us to the executive director, who promptly paid us well for such work. Little did either know, at the time, I had proposed the program to alleviate guilt I was accumulating, while not traveling the miles to see Mom.

For three years, Leigh and I plotted and planned out themes for our circle: Flying and planes. Summer. School. Baseball. Home. Love.

The participants who were with us those three years became dear to us. Mary Lou, Willhemma, Betty. Dotti. We embraced their lives and their hearts. Whatever life those residents had left to give, they gave their all.

That work that propelled me forward to write about my own mother. (www.findyouinthesun.com) That work became the seed in a relationship with Pauletta Hansel, Cincinnati’s Poet Laureate, whose own mother experienced dementia. And the two of us arrived simultaneously at the intersection of art and life. We have decided to stay there a while.

Last summer and winter, through the Alzheimer’s Association of Greater Cincinnati, we offered sessions for caregivers to write and share their musings and mutterings about their loved one experiencing Alzheimer’s or dementia. Or to write and share about the struggle in their own lives, as they contemplate a future without their loved one or a future that might closely resemble that of their mother’s, like I often do.

The poem below was excerpted from Pauletta’s blog, from our summer workshop.

The Alzheimer’s Association of Cincinnati has been enthusiastic in their support of our work. We will offer three caregiver workshops, two in coordination with the Memories in the Making program, and one trial run with professional caregivers, because they too have stories to tell, especially when they sit in for a family who can’t or won’t.

FullSizeRender (34)I have made a life out of my mother’s life. Not her past one, or ones, though I don’t know if she has nine or not. But the life I made has been created from her present one. It’s not the life I planned for either of us. My mother was the extraordinary organizer. She would have never tolerated an unorganized mind. But she tolerates me. And in the interim, I help others organize their mind and their love.

FREE workshops August 12, October 21 & February 10th. Sessions begin at 9 a.m. Each session is hosted at a different venue. Check the website for details.

 

This poem is a weaving together of snippets of writing from the participants of Cincinnati Poet Laureate Pauletta Hansel’s workshop at the Alzheimer’s Association of Greater Cincinnati on July 16, 2016. Innumerable residents of Cincinnati are caring for loved ones with dementia —mothers, fathers, husbands, wives. Their experiences of tenderness and loss are all too often untold. Credit to Pauletta Hansel for the weaving. Read more.
For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.
I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.
But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.
The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.
Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.
The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

From participants in Writing Our Lives as Caregivers
with Pauletta Hansel, Cincinnati Poet Laureate, and Annette Januzzi Wick
Alzheimer’s Association of Greater Cincinnati

2 Comments

Filed under Uncategorized